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Opinion

The U.S. organ donation system needs transparency and accountability

New standards for organ procurement organizations are critical.

Organ donation saves lives and provides hope for the more than 100,000 Americans awaiting lifesaving transplants. In the United States, a complex system exists to make organ donation and transplantation possible, a system that a recent Dallas Morning News editorial suggests “ain’t broke.”

As a veteran leader serving as chief executive of the organ procurement organization based in Dallas, I am painfully aware that it is, in fact, broken, and reforms are absolutely necessary. Patients are dying every day due to a lack of transparency and accountability, and we have a duty to fix that.

Nationwide, increases in donation year after year ignore lackluster performance by individual organ procurement organizations. Even collectively, the fact that we as a community can still claim a record-breaking year in the midst of a pandemic — an outcome that coincided directly with renewed oversight interest from Medicare — may point to just how grossly underperforming many organ procurement organizations have been up to now.

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And while the U.S. may be recognized as having one of the highest-performing transplantation systems in the world, failed and conflicted oversight of that system has allowed too many individual hospital systems, transplant programs and organ procurement organizations to woefully underperform over the years under poor leadership.

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This has resulted in thousands of lives lost and billions of taxpayer dollars wasted. That must come to an end immediately, and Medicare’s new organ procurement organizations performance standards, while not perfect, are a necessary first step to fixing the problem.

The Biden-Harris administration was correct to delay implementation of new organ procurement organization performance measures for 60 days. It is appropriate as well they invited stakeholders to comment on the final measures that were announced under the previous administration.

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The delay and additional comment period, though, are not an indication that the reforms themselves are not desperately needed. And in the end, we must also look for ways to create operational efficiencies, free up resources and expand innovations — like the automated referral system we piloted right here in Dallas that is already saving more lives.

Some might feel that collaboration is an obvious key to success. In reality, we as the donation community have been collaborating for decades with no meaningful impact or effect for underperforming organ procurement organizations. The performance gaps seen in the OPO community would not be acceptable in any other sector of health care. There is no reason to accept them in the life-and-death context of organ donation.

Many organ procurement organization leaders are on the record in favor of reform. We have worked together with patient groups, doctors, researchers, senior Obama and Trump administration officials, philanthropies and bipartisan members of Congress to get this right.

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Too many who oppose the new organ procurement organization performance measures, including some underperforming OPOs, the Association of Organ Procurement Organizations and the United Network for Organ Sharing, are under congressional scrutiny. UNOS has been issued a subpoena by the Senate Finance Committee, as part of a bipartisan investigation into serious concerns related to organ procurement organization performance and the oversight of their work. A House oversight committee, meanwhile, has requested information from OPOs and the AOPO, citing concerns about mismanagement, waste, and abuse in the organ transplantation industry.

The unfortunate reality is that a broken system has led us to this point.

I will never discount the lives saved in any given year and the selfless donors and their families who make that possible, but I also won’t allow myself or my team to forget those who still wait. Lives are at stake. Patients deserve better. Our communities deserve better. We must do better.

Patti Niles is chief executive of the Southwest Transplant Alliance. She wrote this column for The Dallas Morning News.

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CORRECTION Feb. 12, 2021: An earlier version of this column incorrectly stated that OPOs and the AOPO were under subpoena by the Senate Finance Committee. A House oversight oversight committee has requested information from those organizations, citing concerns about mismanagement, waste and abuse in the organ transplantation industry.